diagnosis

[Bliz]

Exactly as Alyoop said, this would be PLS or UMN MND but not ALS. Which is good. But I think clonus is definitely not enough for PLS diagnosis, clonus is quite common and you lack other definitive signs like Babinsky. So basically they just suspect it is UMN MND - that is "good".
Hope it turned out to be something treatable.
Do not lose hope!

 

[notme]

I'm pretty confused, too. My body has UMN signs in several areas--but only LMN in one region--so they can't say I have ALS at all. How did they do that when there aren't LMN signs?

Do they do things that differently over there? Or is your diagnosis R/O ALS?

Definitely see another doctor! My diagnosis, officially I think, is still possible ALS--because there aren't enough LMN and UMN in enough regions (which is just fine with me! PLS has a much better prognosis)

In UMN issues--there can be a lot of other reasons for them--and as I understand it, it takes years to officially diagnose--because by the "basic criteria" I fit it to a T and then some-- clonus, spasticity, positive babinski, hyper reflexes--the whole ball of wax--but only in my LEGS. Arms and lungs are muscle weakness--diminished strength and atrophy.

 

[kiwisally]

Where is Johnny...... when you need him.......?

 

[nightwolf_mk]

I will try another doctor. All I know is that I'm losing stength in my arms, my voice is going away day by day, I can't swallow very well some foods, my foot are swollen and all of this is becoming worse in a daily basis. I really hope they can find another explanation, but unfortunately I think they will not...

 

[GKGK]

I will try another doctor. All I know is that I'm losing stength in my arms, my voice is going away day by day, I can't swallow very well some foods, my foot are swollen and all of this is becoming worse in a daily basis. I really hope they can find another explanation, but unfortunately I think they will not...

nightwolf_mk,

Since you were diagnosed with BFS (5 years ago) your symptoms never improved? Were you always feeling something wrong?

You are losing strenght in your arms and had a clean EMG?
How can it happen? I hope you are misdiagnosed!

Best,

GKGK

 

[nightwolf_mk]

I changed my status so the bfser's don't freak out about my case. After evaluation with some other neurologist specialist in this kind of diseases I will post here again.

 

[Grateful]

Nightwolf mk

I very much hope that it will prove to be something with a much better prognosis, and that you feel better soon. With luck you won't need the services at ALS Brazil!

And thank you also for amending your status; I think it shows a sensitivity on your part to the wellbeing of others. There are far more people reading these threads than posting on them so what you write has more influence than you may imagine.

Good luck!